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#200780 04-18-2021 03:50 AM
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Although I’m happy to be alive 17 years after my initial diagnosis of oral cancer, I have experienced a host of long term side effects from treatment. Throughout these years I’ve been able to “get over” many insecurities and have learnt to cope with the others. What I’m finding most embarrassing —I cannot speak without spewing saliva everywhere. I experienced this problem prior to having all my teeth extracted however it’s severity has greatly increased since then. People move away from me when I am trying to engage in conversation, even my doctors. I can clean my tablet and phone screens, yet after a very short time using the phone on speaker, I can see a filthy, spot covered screen; and even my tablet. I don’t usually speak at my tablet, so I’m figuring the spray comes out even when just exhaling. Has anyone else experienced this, and if so please tell me how you handle this. Thanks.


Age 59
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX calcified atheroma carotid
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Hi Stephen, its been a long time since I have been on line here, but yes I have the same thing and I have only been out of radiation for the past 12 years, I am kind of happy that I always wear a mask now due to spitting and chipping teeth. I usually just carry a napkin or cloth one, not sure but I can ask the oncologist that I am seeing on Monday take care, Michele


SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
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Thanks so much for sharing your struggles. At least I know I’m not crazy. What I’ve experienced is lots of loving friends and family who will simply dismiss my concerns, and say things like, “No, you don’t spit when you speak.”, etc, but I know they’re just trying to spare my feelings. I wish people could just tell me the truth. I totally understand the chipping teeth issue, I went through it and ended up having them all removed. For me now, it’s been 11 years since, and 17 years since cancer diagnosis. Funny that you should say wearing a mask gave you some sort of comfort; I felt the same.


Age 59
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX calcified atheroma carotid
Joined: Sep 2009
Posts: 701
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Hi, StephenS,

My husband is almost 14 years out from diagnosis and treatment. He has difficulty with drooling---late effects of radiation and surgeries. He has been working with a speech pathologist who has given him exercises to help improve his swallowing. We're hoping this will also help him control the flow of saliva. The SP said that within the last 5 to 6 years, there has been more emphasis on working with H&N cancer patients right after treatment. The only time we saw a SP was after my husband had his trach removed, kind of a "one and done".

Maybe a SP can help you, too. We're hopeful that he can get some relief, however it has been a long time since diagnosis. We'll have to see how this plays out. Best of luck to you!


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
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Hi Steve, yes I get it. ..........I drool , especially when I sleep. Wet around me when I gee up. Also, when I fly and take a nap, It looks pretty bad! But so what, as you said...happy to be alive. My personal experience when I spit of blow food out is that most folks appreciate that I am still trying to live As the saying goes...the new normal

Good luck, Steve


steve
72 yo
SCC 2009
Radiation/Chemo, clear 2010
Active triathlete
NPO and bad voice after 12 years
But doing great
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I know it’s been some time since I asked the original question, and since you were kind enough to respond. I’d like to thank you for your openness and want you to know how much better your post made me feel. I don’t mean to imply that I’m happy someone else is going through this too, I’m just happy to know I’m not alone.
All the best wishes for you.


Age 59
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX calcified atheroma carotid
Joined: Feb 2012
Posts: 31
Likes: 4
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It’s the strangest thing, and although I read all about side effects, both immediate and long term, I never read about the spitting issue.

Hope this helps others out there who are experiencing this syndrome.


Age 59
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX calcified atheroma carotid
Joined: Mar 2018
Posts: 83
Likes: 1
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Posts: 83
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My dad had Stage IV cancer twice, and had two mandiblectomies, chemo, radiation and a wide mouth resection. Right after his second surgery, he had a lot of drooling because his mouth was so swollen it wouldn't close. He has some nerve damage and they removed his gums on one side, so he has a hard time containing the spit. He said when he lays down, he has dry mouth, but when he's sitting up, he has more than enough drool.

We met with a speech therapist shortly after the second surgery. She said sometimes people will get injections into their lips to help with some rigidity, or to make the sides even, or to help the lips seal. She said they also make little tablets you put in your mouth to dry up the saliva that's in there. She taught him some exercises to do several times a day to help with making certain sounds and closing his mouth. In the end, three years later, dad didn't do anything about it, but I know it bothers him. He wears a mask out in public (thanks to the pandemic) and that has helped a lot with his embarrassment. He also cleans his computer screen all the time, and doesn't eat in public if he can help it. Sorry I don't have much helpful information. I wish you luck! You're not alone. For what it's worth, no one else in my family is embarrassed that my dad spits. We're so glad he's still here.

Last edited by Vicky1; 03-20-2022 05:54 PM.

Dad was diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
9.6.19 Clear CT!
8.6.20 Clear CT!
1 member likes this: Latifah
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HI, Steve,

Three months ago, my husband and I met with another H&N surgeon who injected his parotid glands and submandibular glands with Botox. It is helping. He has since had a second visit with additional Botox. We will continue this as long as it is helping. One thing she noticed was that his lip, on the opposite side of his mandibule rebuild, droops as compared to the affected side. Radiation had tightened his lip which makes the untreated side droop. She suggested we speak with one of her colleagues to see if he can tighten the droop by pulling up the corner of his mouth with a tether. Sounds really promising as it would give my husband another way to contain saliva instead of leaking out at that point. I'll let you know how it goes. My husband has not yet decided to do this procedure.

Sending my best to you.


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
Joined: Feb 2012
Posts: 31
Likes: 4
Contributing Member (25+ posts)
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Joined: Feb 2012
Posts: 31
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Hello and thanks for sharing your experiences. I would also like to apologize for not replying to your post earlier.I have no excuse. Sometimes I become so enveloped by the day to day responsibilities of my life; sometimes I become so exhausted from caring for my Mom who’s an octogenarian; sometimes I succumb to depression and my way of coping is withdrawing.

I truly appreciate you taking the time to post some encouraging words. It is reassuring to know that I’m not the only person who has been suffering through this issue.

I hope you are well and wish only the best for you. Thanks again.


Age 59
DX SCC T3N1M0 R BOT 10/04 135lbs
TX Hemi-Gloss 11/04
MET Neck 12/04
TX 01/05 G-Tube,PortCath,6wks chem+6wks chem& IMRT,Max dose
06/05 RND,42 nodes 1 bad,All clear 120lbs
DX femoral hernia 09/09,repair 10/09 94lbs
HBO 11-12/10
11/10 All teeth out,05/11 dentures
DX hypothyroid,04/13
DX inguinal hernia,repair,04/15 127lbs
DX cachexia (CACS),03/16 98lbs
DX EPI, TX PERT,10/18 115lbs
DX RFS,11/18
DX iron deficiency anemia,02/19 118lbs
TX infusions,04-06/19 115lbs
DX calcified atheroma carotid
1 member likes this: Pogi87
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